A Patient's Musings About RA From a Scientific Frame of Reference

There’s a great scene in the classic 1975 movie Jaws where Fisherman Quint, Police Chief Brody, and Scientist Hooper are sitting around on a boat during the evening. The three are drinking and loosening up after a stressful day of chasing the shark. (Robert Shaw, the actor who played Quint, was reputed to have been wildly drunk during the filming of the scene.) Hooper and Quint are playing a clowning game of one ups-man-ship comparing their body scars. They pull up clothes to show their various badges of honor – some from school and bar room fights, some from burns, and others from clashes with various sea creatures. Brody feels like the odd man out as he only has an appendectomy scar to share. He lifts up his shirt, looks at his medical-induced scar, and then lowers his shirt deciding not to participate in the game…

…Rheumatoid arthritis is much like this script. Some of us may have physical reminders – scars so to speak – of our RA. These may come in the form of disfigured joints or as actual scars from surgeries intended to repair the damage done by RA. These outward signs are constant reminders to us about our condition.

Last Friday brought a 6th surgery in the past seven years. This is remarkable given the fact that the first 46 years of my life were relatively healthy with no major medical procedures. All surgeries have been connected with rheumatoid arthritis. Friday’s surgery was an outpatient procedure on the right elbow designed to remove damaged tendon and bone and to reattach tendon to the joint. It’s been an ongoing battle with both elbows for the past 18 months but other RA issues, primarily neck surgery and recovery last spring, took precedence.

The orthopedic surgeon who conducted the procedure specializes in hands and elbows. He said that he’s done numerous surgeries on the elbow and my tendon was one of the worse cases he’s seen. Healthy tendon tissue is typically smooth, white, with parallel lines. He characterized mine as mushy, gray, and undefined. After clearing out the tendon and removing damaged bone tissue, the remaining tendon was connected to other nearby healthy tendon. Holes were drilled in the bone to hold suture anchors that were used to reattach the remaining tendon to the joint.

The procedure was scheduled for early afternoon. After a long wait where drinking and eating were not allowed since the previous evening, a nasty migraine began to set in. The nurses stated that this is common due to dehydration. Lack of coffee probably didn’t help. They increased the saline drip line and provided a bag of ice. After waking from anesthesia, the migraine completely vanished. This was the easiest postoperative recovery in that there was no nausea or pain at the surgery site. The anesthesiologist said that he would just use infused anesthesia and avoid gases and narcotics that cause nausea. The surgeon used local injections of anesthesia to block pain. These lasted for at least 12 hours. Percocet, a combination of oxycodone and acetaminophen, is helping keep pain in check.

The arm was immobilized from above the elbow to the fingers. The dressing was changed after three days and the stitches will be removed after 10 days. Occupational therapy will begin at two weeks to slowly regain movement and strength.

There’s never a dull moment with RA and this episode is just part of the ongoing battle. After knowing that the surgery will be infection free, I will begin another part of the battle by adding a new drug called CellCept alongside current Rituxan infusions.

RA Supergirl created petition to the White House to add rheumatoid arthritis to the Social Security Administration’s Compassionate Allowance List (CAL). According to the Social Security Administration’s website, the list is “a way of quickly identifying diseases and other medical conditions that invariably qualify under the Listing of Impairments based on minimal objective medical information. Compassionate Allowances allow Social Security to target the most obviously disabled individuals for allowances based on objective medical information that we can obtain quickly.” Rheumatoid arthritis, which can result in disability, is not currently on the list.

So much for a new year’s resolution to avoid surgery in 2015. Surgery on my right elbow is now scheduled for February 6th – we’re waiting until after my son’s wedding at the end of the month. This will be my 6th RA-related surgery. Both elbows give fits including persistent pain and tenderness but the right one has been the bigger beast probably because I’m right handed. In August 2013, first symptoms were noted. An MRI in October 2013 showed a 50% tear in a tendon. Enthesitis is the term for damage in an area where a tendon connects muscle to bone and such soft tissue damage is common in rheumatoid arthritis in general an in my case specifically. The orthopedic surgeon gave a cortisone steroid injection in November 2013. Occupational therapy was done from December 2013 to February 2014 but it was stopped as progress was not realized. Finally, in November 2014 a novel platelet-rich plasma injection was tried to no avail. The orthopedic surgeon, who specializes in hands and elbows, said that all conservative treatments failed to help and surgery would be required. He indicated that the surgery would include an incision across the elbow, removal of the damaged tendon, shaving off damaged bone tissue, and using anchor sutures to reattach healthy tendon to the bone. Anchor sutures involve drilling holes in the bone and inserting anchors which hold special permanent suture material. The arm and wrist will be immobilized for a few weeks. Occupational therapy is already scheduled starting two weeks after the procedure. My rheumatologist wanted to add a new DMARD, CellCept, to help with Rituxamab infusions. But now we’ll wait until after surgery to help avoid any infection complications.

While surgery is always a last effort, it’s time to take care of this ongoing issue as the pain is non-stop and use of the arm is limited. Updates will be posted as the process unfolds.

While the ice bucket challenge for ALS was viewed positively, angst about the lack of such publicity for RA was noted.

Cervical surgery was conducted in May and the recovery took sometime. Three vertebrae were fused.

Hip issues continue. Physical therapy was prescribed but put off due to attention given to other issues.

A torn tendon in the right elbow continues to cause problems. Various treatments, including a recent platelet-rich plasma injection, haven’t worked. Surgery will likely be scheduled soon after the new year.

Research into RA continues and various proteins and immune system components are being targeted.

Thanks to all those who took time to read and comment on this blog. I wish everyone a wonderful and healthy 2015!

Since being diagnosed with RA in 2009, it’s been an interesting process trying to find the right treatment combination. To date, seven biologics and four disease-modifying (DMARDs) medicines in various combinations and dosages have been tried. The DMARDS used in the past include the following:

Sulfasalazine – This was the first DMARD tried after diagnosis. An allergic reaction resulted in severe hives and cessation of this drug.
Methotrexate – Oral pills were used. Unrelenting and unbearable gastrointestinal issues precipitated an end to this trial.
Leflunomide (Arava) – This DMARD did not have much impact on RA symptoms.
Azathioprine (Imuran) – This DMARD did not have much impact on RA symptoms.
Methotrexate – Self-injections were used for the second trial of MTX. Injections were stopped about a year later due to evidence that they were contributing to migraines.

Rituxan (Rituximab) is the latest biologic and I’ve been on it for 1½ years. The typical suggested treatment plan is two infusions every six months but I’ve been on a schedule of two doses every four months. The last infusions were in October and November but it seems that its impact is not just not optimum. Joint pain, swelling, and fatigue are all on the increase and neck surgery six months ago coupled with an elbow surgery in the near future lend evidence that Rituxan alone is not keeping the disease in check. After a discussion with my rheumatologist this week, it was decided that adding another DMARD might help control the disease processes. There aren’t many choices left and my rheumatologist suggested trying Mycophenolate, or CellCept, in combination with the Rituxan infusions.

CellCept was originally developed to help organ transplant patients from rejecting their new organs. It works by suppressing the immune system. Now it’s commonly used to treat lupus but is also used for other autoimmune diseases including rheumatoid arthritis. As with many DMARDs, common side effects involve the gastrointestinal system. Blood counts can be impacted so regular blood tests are conducted. [1] There aren’t many published studies on CellCept although it’s been proposed as an alternate DMARD for those with refractory disease not responding to other treatments. [2]

A new treatment experiment begins. Hopefully it will bring some much needed relief.